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"Brunch and Learn" at Reata Pharma

THE REATA EXPERIENCE

Reata Pharmaceuticals, in Irving, TX, invited an FA patient panel to speak about our histories and experience living with FA. FARA has partnered with Reata to develop a drug therapy in the treatment of FA. On April 7, 2016, Reata hosted a “Brunch and Learn” to educate all employees about FA by putting a face to the disease.

The conference room in the Reata offices was full; around 50 employees and four speakers on the panel participated in the event. I believe the collective stories of the patient panel were effective in relating the gravity of FA, and the need for a cure. As the meeting concluded, a company statistician introduced herself, and told me that after hearing our stories, “It makes me want to work harder”. I grinned from ear to ear.

Pull for a Cure 2016

2016PullforaCure1On February 13, FARA kicked off our fundraising efforts in Tampa with a literal BANG as supporters participated in “Pull for a Cure”, an annual clay shooting tournament held at Tampa Bay Sporting Clays and hosted by the Hunters & Liars Club.

After picking up their shells and a safety lesson, teams of four shooters each climbed into golf carts and headed back into the woods where the ten different stations were set up. At each station, machines flung clay pigeons into the air from different trajectories, angles, speeds, elevations, and distances to mimic actual hunting. While the teams with the highest scores at the end of the day did get bragging rights, the competition was all in good fun as both first-timers and seasoned hunters took to the course. 

McAlister's and Freddy's Give Back

GiveBackNightsChristin“Charitea” Night at McAlister’s Deli, Broken Arrow, OK

Tuesday, January 5, 2016 was a pleasant, winter evening to enjoy soups, sandwiches, salads, or a loaded baked potato, along with McAlister’s refreshing ice tea. McAlister’s Deli is a regional favorite, and a popular eating destination in Broken Arrow, and that evening, McAlister’s gave back 10% of the evening sales. FARA received $309. I then applied that money to my rideATAXIA team

Roundtable for Rare Disease

ARMroundtableAs Rare Disease Day 2016 is today (February 29), it is only fitting that I talk about my experience speaking  at the Alliance for Regenerative Medicine’s (ARM) Roundtable for Rare Disease (alliancerm.org/event/arms-rare-disease-roundtable) at the end of January. This event was cohosted by FARA. Along with doing much of the emceeing, FARA’s (our) Ron Bartek also chaired a panel discussion on collaborating on cures for rare disease.

When Jen Farmer asked me to speak, I was incredibly honored and immediately said yes. Then, I realized I had to say something and in order to say it well, I should know what regenerative medicine is and what ARM does. As the name regenerative indicates, regenerative medicine is focused on making organs and tissue that have been damaged by disease, injury, and aging well again. (Three cheers for that I say!!) This may sound like medicine as we know it, but what makes this approach unique is that it is inclusive of not just biological science, but also technological and chemical science. So, it doesn’t let medicine lay claim to improving the lives of patients, it says we need lots of collaborators to do that and we shouldn’t just be looking to one field. Collaborators. That’s what ARM does (FARA too!), advance regenerative medicine by bringing potential and active collaborators together. And, at its essence, to me, that is what the roundtable was about. How do patient advocates, patient groups, academics, and pharmaceutical companies collaborate to cure disease? 

UCLA/FARA Symposium

UCLAsym2016

Hopes and Heroes

Hello! My name is Mekayla, I’m 18 years old and a senior in high school! I was diagnosed with Friederich’s Ataxia in July of last year. My hobbies include dancing (which I’m still trying to do!) and babysitting my nieces and nephew. 

About a week before the symposium my mom had thrown around the idea of possibly going to UCLA. We have never been to anything like it before, and my mom and I agreed that it would be an amazing experience and very informational! 

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